The Woman Who Couldn't Wake Up : Hypersomnia and the Science of Sleepiness

Sleep was taking over Anna’s life. Despite multiple alarm clocks and powerful stimulants, the young Atlanta lawyer could sleep for thirty or even fifty hours at a stretch. She stopped working and began losing weight because she couldn’t stay awake long enough to eat. Anna’s doctors didn't know how to help her until they tried an oddball drug, connected with a hunch that something produced by her body was putting her to sleep. The Woman Who Couldn’t Wake Up tells Anna’s story—and the broader story of her diagnosis, idiopathic hypersomnia (IH), a shadowy sibling of narcolepsy that has emerged as a focus of sleep research and patient advocacy. Quinn Eastman explores the science around sleepiness, recounting how researchers have been searching for more than a century for the substances that tip the brain into slumber. He argues that investigation of IH could unlock new understandings of how sleep is regulated and controlled. Eastman foregrounds the experiences of people with IH, relating how publicity around Anna’s successful treatment helped others form a community. He shows how a group of patients who felt neglected or dismissed united to steer research toward their little-known disorder. Sharing emerging science and powerful stories, this book testifies to the significance of underrecognized diseases and sheds new light on how our brains function, day and night. It is essential reading for anyone interested in sleep and sleep disorders, including those affected by or seeking to treat them. "Sleep was taking over Anna's life. Despite powerful amphetamine stimulants and multiple alarm clocks, the 29-year-old Atlanta lawyer could sleep for 30 or even 50 hours at a stretch. Forced to stop working, she was losing weight because she didn't stay awake long enough to eat. Doctors didn't know how to help Anna, until they discovered that her spinal fluid contained a substance that acted chemically like sedatives. Her doctors called it "sleepy juice," but had only hints about what it was. The Woman Who Couldn't Wake Up is a medical and neuroscience detective story centered on idiopathic hypersomnia (IH), the "shadow sibling" of narcolepsy. Emerging research on IH and narcolepsy has surprisingly wide-ranging implications for how our brains function, day and night. Anna's experience, which was featured on the Today Show and in the Wall Street Journal in 2012, begins the book. Her successful treatment planted a seed, which has grown into an international community. The book will tell the story of how this unusual community came together, and the far-reaching consequences of their actions: the first clinical trials for the condition are currently underway as a result of the patients' banding together. Imaging studies can show that patients' patterns of brain activity are different in IH, compared to narcolepsy. IH also looks different from sleep deprivation, which is helpful for diagnosis and for demonstrating that IH is "real." A number of drugs are currently being tested to manage IH symptoms. At the same time, people with IH appear to have imbalances in REM sleep and deep sleep; examining these deficiencies naturally leads to topics such as non-pharmaceutical modes of enhancing sleep with light and sounds. The book concludes with an exploration of what the IH community can learn from other under-recognized diseases, the evolving sense of IH community, and the involvement of patients in steering clinical trials"-- Provided by publisher Table of Contents Introduction 1. Anna Sleeps a Lot, and We Don’t Know Why 2. The Doctors and GABA 3. The Antidote 4. Rye Versus MSLT 5. Behind the Curtain 6. The Essence of Sleepiness 7. My Favorite Mistake 8. The Atlanta Sleepers Club 9. The Story of Flumazenil 10. Weird Drugs 11. The Heart of the Brain 12. Immobilized by Happiness 13. Frustrating and Mostly Fruitless 14. Everything Off Label 15. Knock Yourself Out 16. Biomarkers of Sleepiness—and IH 17. The FDA Opens a Door Acknowledgments Notes Index